After getting my PSA done last weeks and seeing those results...from 217 to almost 600....
This morning...we saw the worst possible scenario playing out at the doctor’s office... When I got to see my scans they recently did... it was definitely time for a big celebration of being alive today! it’s amazing! I am riddled with cancer, but have no pain and only fatigue from my low platelets and hemoglobin and white cells and red cells, etc. I am supposed to be very careful not to cut myself or bump myself because of bleeding, however, the doctor still anticipates getting my counts up good enough to try one more of the LU177 treatments. For today’s celebration I decided on 2 pounds of the biggest king crab claws I have ever seen! With melted Irish butter! The two pounds were all for me! And I am stuffed like a vulgar pig. And for ournext course we are having très Leche cake.
LIFE IS BEAUTIFUL,
gJohn
p.s. LU177 doesn't always work magic. The doctor still thinks it could "turn around" after another treatment. I've made such a huge "leap of faith" and jumped so many hoops to get here and into the study that I do want to give it another shot. Then it will be returning to South Florida(Ft. Lauderdale) 🥳
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greatjohn
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I’ve been watching your journey with the Lu177 trial, and applaud your attitude, and am thankful for you not being in pain. If there’s a silver lining at this minute, it’s that you feel no pain and well enough for a joyous feast! Prayers that your numbers can align.
You always have the best food porn. Looks delicious, enjoy it and life lived. So glad your not letting anything drag you emotionally into an abyss and that you have no pain. Except for a stomach full of crab that is.
Hey !,,, The reason you’re called greatjohn should be because you have such a great big Heart. I sure wish your infusion had better results , but like you said you are comfortable and obviously your appetite hasn’t suffered any. 😂😂😂 I’ll cross my fingers that you are able to have that 2nd try and good things come from that as well big guy. I’m sending out a big warm fuzzy hug of hope to you and hubby.❤️❤️❤️
Ok …on a different direction , you ate those all of those delicious gigantic crab claws and all I see on hubby’s plate is a little pile of chips and that little pita pocket !!!! Yayahahahaya. Well I guess you deserve it after the beating you are taking with that 177 , that’s for sure.
Yayahahahaya … yea I knew you weren’t really going to eat those and make sit and watch without porking ( get it … “ porking “ 😂 ) him out too. Looking forward to good news from your next infusion buddy. 🦀🦀🦀❤️❤️❤️
I always look forward to your posts. You always start with gratitude for the good things and embrace them. Hoping for good numbers for you and all your favorite foods and the company of those you love. Good luck greatjohn!! Thank you for keeping us posted.
John, I love the gratitude attitude that you have. I am sure you will see the turnaround after the second infusion.... And your body with the help of the LORD will recover from low platelets and hemoglobin and white cells and red cells, etc. Will be doing my blood test soon to see how my body is reacting to the LU -177. We will be a great success story for LU-177 treatment. Amen
Thanks for sharing your ongoing journey! I'm a little confused: was your "riddled with cancer" scan worse than the previous reference scan? PSA can spike in response to treatment as cancer dies and dump their contents. Not sure if tumors can initially swell hiding improvement in a scan. In other words, I've got plenty of excuses why things may not seem as bad as they seem, and your second treatment will likely produce measurable results.
I wish I had your ability to have a celebratory dinner after getting "bad news". Unfortunately for me I'm in a period of increasing pain which makes everything sort of suck. I suppose I'd celebrate if I was pain free. Okay, in fact there was a gathering of friends I attended last weekend which was a sort of celebration, and I made it a point not to talk too much about my cancer and had a good time overall.
I hope you will be alive for a long time to come, because you set such a good example of living well with this disease.
Oh, and they had a story on LU-177 on the local news in which they called it "game changing". Well I had a good rant at the TV because they take something that very well for some and buys time for many, and they oversold the shit out of it.
Best of luck to you and again, thanks for sharing your story.
By “riddled” I mean it now appears to be an every part of my spine where it was only in a couple of vertebra before. In previous places it showed up in two spaces on my ribs, now it appears to be an every rib and in my sternum. It’s in my collarbone on both sides several places around my skull and very scary the doctor says in the bone that is behind the tongue inside the head. It’s also in shoulders hips pelvis thighs pretty much down to the knee and down to the elbows on my extremities. Still I feel amazing that I have no pain to speak of. The weakness from low hemoglobin is debilitating at times, but I just take things very slowly. I hope your pain gets better Tom, and that they find something to give you A break from the beast as I hope this second treatment (if I’m able to get it )will give me a break from the beast.gJohn
Wow, you've passed me in the bone metastasis department. So far there's no evidence of it in my arms, legs, or head, not they've done any scan that would find it in those places since 2019. Still, no pain is great for QOL and IMHO good for prognosis, if for no other reason than you can still get around and generally cancer dislikes activity.
Out of curiosity, how low is your Hgb? Mine got down to 9.1 and I had to save my limited energy for trips to the bathroom. I've heard part of the effect isn't just the level of Hgb, but how fast it dropped. A slow drop over many months gives the body time to adapt.
I get the same thing, including from Dr. Beltran! But in this case, since she's signed me up for a trial, it's best she sees me as healthy with a high performance status to help me get into the trial. I used to asked people what they expect and they answer is usually some combination of extreme weight loss, no hair, and no energy.
Tom...what is this "DLL3" trial about? what are they testing. Yes, it was amazing the "hoops" I had to jump to get into the trial. I made it by the skin of my teeth on some of the blood levels. It was so strange...I had my first injection date already set when we flew home to bring the car back (a five day trip) and I didn't find out for sure that they had accepted me until after we had already taken off on the roadtrip back to Omaha.
DLL3 is a protein that is frequently overexpressed in neuroendocrine tumors. The trial drug is a DLL3 antibody connected to something that attracts immune T cells. The idea is to turn a tumor that is normally "cold" to an immune response and make it hot. I like the fact that it's a targeted therapy so should have more "effect" and lower "side effect". However, being a phase 1 trial I'll be the guinea pig in trying to find an appropriate dose for later trials. Don't really mind, there's always the chance I'll get the magic dose for me and a great response. If nothing else, it will be a break from all the chemotherapy which I've been on for about 15 of the last 18 months.
hmmm....I just now did some research on neuroendocrine tumors...I didn't realize that regular prostate cancer can morph into this type with time. I thought it was like Brca 1 /2 or the other genetic anomalies. Tom...if the trial is phase 1, does it mean you might be getting a placebo? I've just been learning about trials since getting to the point where they were all that was left...and I know that phase 3 (like the one I'm in) means everyone gets the "juice".
The other thing~~ I would try to find out more about "how" targeted is this? Since it has targeted my blood(bones/blood production)...the Lu-177 which is "targeted" also has a different "target" in my mind...LOL
I'm in a NOT SO HAPPY place ....with how my cancer seems to have been angered by the "targeting" and spread EVERYwhere in my body...all in just 8 weeks and only one treatment. I am now waiting to see if I get back to a "number" where I can take another treatment...and wondering if I got "these bad results" from one treatment...what makes me think a second treatment will do the opposite? The doctors, the nurses...all have ways of explaining things as "spikes" and "flares"....but my semi-intelligent mind is thinking they are "rationalizing" without any rational evidence.
I feel like I'm truly between a stone and a hard place...or as my Mom used to say "damned if I do/damned if I don't".
sorry to give "tmi" but I have no one really with "skin in the game" to talk to about my fears...and how I want to go HOME and be with my puppy in my bed and with my garden. The sacrifice I have made so far....has brought nothing.
No problem with "tmi", we need to talk about some of the less optimistic parts of treatment too! Cancer in you marrow would definitely be a conundrum with targeted therapies. My targets will include the liver, which is rather important to metabolizing a lot of the drugs we take.
I can sort of relate to the not so happy place. I had cabazitaxel last fall and that also seemed to feed the cancer more than it killed it. After three infusion my liver was 50% cancer, where it had been cleared by a carboplatin cocktail only 6 months earlier. Likewise, folfiri started to fail right at about the time I had my first Covid vaccine shot. At first we thought it was a side effect of the vaccine (it does cause lymph nodes to swell), but now I'm left wondering if it opened the door to the cancer. I've regularly had some sporadic spots in my lungs, and they've always disappeared very quickly after starting most chemos, but not this time. Now I wheeze when I breath and have some fluid between my lungs and ribs.
I doubt I could do what you have done and move to another state for an experimental treatment. As for flares, at diagnosis my PSA was 216.0. After a shot of Eligard alone it flared to about 360 and today it is at 0.02 while cancer runs wild in my lungs for the first time. It's a bad time for me to try to be a runner
As for trials, my understanding is phase 1 are very small trials where the drug is tried in humans for the very first time. The first patient gets a small dose and is watched for reactions. Subsequent patients get higher doses until they find a dose that creates too many adverse events. Somewhere in the middle they hopefully find a good dose for a phase 2 trial. Everybody in phase 1 and 2 trials get the experimental drug.
Phase 2 is when they give the drug at a dose determined by phase 1 to a larger population and look for an objective response, to verify that the drug may be doing something. This is the phase I'm a bit fuzziest on, so take it with a grain of salt.
Phase 3 are usually the "placebo" controlled trials where some get the study drug, and others get some other known drug or nothing to prove that the treatment is superior to currently available treatments. Your trial is odd if everybody gets the drug.
I was talking with Dr. Beltran about how some people have gotten terrific responses in studies that ultimately didn't succeed. She said this is a problem and she hopes we eventually start looking into why it worked or didn't work in some subjects, or was it a problem with the study design where median survival was misleading (a very common problem with immunotherapies where survival curves frequently diverge in favor of the study drug after the median is reached).
I thank you and everybody who takes part in a trial that helps moves the science forward! We're both in a similar position of being dependent on studies, recently approved drugs, and the possibility of rechallenging with prior treatments that our current cancers have already survived (in my case, it would be a carboplatinum rechallenge). For us, there is no option that gives an 80% response rate with a median improvement in survival for over a year. It's more like a coin flip that we may get a few extra months, and perhaps a 1% chance of being the miracle response we hear about on the news, which is what really is giving us any shred of hope. I've already heard of Lu-177 being called a "game changer" in the local news. Boy did I rant at the TV about that.
Best of luck to both of us! I hope the first treatment devastated the cancer in your marrow so it won't be targeted as bad in the next one. More "happy thinking" perhaps but it's the only way I know of to get through these days.
I didn't have any cancer in my marrow...the doctor said the lu177 was hitting the spots on all my bones and that is what caused the marrow to stop working..and he expected GREAT results because of this...however my results with the opposite of GREAT...so alas, you're right...I may be flipping a coin soon to decide whether to stay in Omaha or return to our home and my puppy and friends.
I've been following you since day 1 and hoping for the best for you....you're blogs are great...and, like you, I was very active and working out in the gym until the "plague" started...even up on my roof overseeing roofers about 6 months ago....I've decided at this point (with my issues) I will be staying on the ground from this point on...LOL. A fall would be the end. Even though you're a bit younger than I am...I relate to your issues better than a lot of people on here.
Ain’t over till its over, John. I don’t want to give false hope but the fact that your body is telling you you’re doing fine and with your zest for crab legs (had a pound and a half myself on Fathers day!!) i wouldn’t be surprised if things aren’t quite what the scans say. Tom noted that your body has a way of telling you things.
Got the same results form relatives at reunion...you look really good, I didn't expect to see you looking so good. Just dying inside, outside looks good.
"Nothing makes the earth seem so spacious as to have friends at a distance; they make the latitudes and longitudes." -Thoreau. My thoughts are with you.
I woke up this morning wondering when you would give us an update again. I am glad you were able to enjoy that amazing looking crab! I believe there are many on this board like me that are watching and rooting for you but not always posting. Best of luck with one more treatment.
I hope you have recovered from your feast. 😀 Thank you for all of your posts. I wish you and your partner all the best as you continue on your journey. 🏳️🌈
Your ability to keep your sense of humor and humility is inspirational for me.
I am also in a clinical trial and the numbers and scans are showing some stability but I have had significant discomfort recently. I am hoping the joint pain and back pain is CRS. That stands for Cytokine Reaction Syndrome in this case, though I also have some degree of "Can't Remember Shxt." I suppose that is CRS squared.
The Medical Oncologist told me last week he was happy with the progress. I would like to see the metastatic lesions lighten up a bit. They are all over the place for me too. Femur to neck and head. I didn't curse at him when he said he was "happy."
In Yiddish, my family elders would say you are a "gutte neshuma," or a "good soul."
I just read your history and it seems like you’re like me ...nothing really works for long. I had such incredibly high hopes for this LU 177, I’ve been doing different treatment for seven years now. The longest time I had with some stability was about 2 to 3 months after chemotherapy. I was hoping for buying a year or two of being “Off duty” So I could just live life and do a little traveling that we want to do again. If I do get well enough to do the second treatment and I don’t get some really good results, I think it will be time to stop beating a dead horse and return to Fort Lauderdale from Omaha.All the best on the journey
Thank you for your inspirational attitude. It makes me happy seeing someone "giving the bird" to the whole situation.I am impressed with your crab meal.
Thanks for the update and crab pic. My stomach is full and expanded just thinking about eating that. I am so glad you have no pain. Here's hoping you have a tiny bit of pain and better scans after your next treatment.
I salute your celebration! Crab fantastic! White wine, too? I'm kind of near you in rising psa, tried many treatments, feel OK, love good food. Thanks for posting.
If you guys ever get up to Seattle get in touch with me and we will go out for the finest crab there is… Dungeness crab! My treat! Best wishes for your next round of treatment!
Praying that you get to have the 2nd infusion of LU-177, Keep your chin up mate. You are an inspiration to all the guys on HU.Wishing you all the best,
Great John,If only we all could say Yes to "Do you feel like I do? while you dine so well! It is simply amazing how well you are handling the big picture. Great doctors, great attitude and great appetite. I wish you many, many more pleasurable times like this🤙
hmmm. Even I am having my doubts about hanging around in Omaha for a second dose...with the first nearly killing me and giving me only BAD BAD BAD results ...both in PSA and scans....it's seeming insane.... like expecting a different result from the same action...I can't understand how a second dose would suddenly reverse the bad results from the first dose and give an improvement? ~~so as you see...I'm feeling a bit nonplussed myself. Dazed and confused (in Omaha)John
Let your ace doctor help with the decision on another round of RL. You'd think having so many PSMA positive sites, it should work to take some if the bastards out. The concern you are living through now is the collateral damage to your marrow. Wishing for full recovery on your cell counts and more good times ahead. I'll crack some King crab and toast to you soon when my wife and I go to Alaska for Salmon fishing on the Kenai river in July. Stay strong Great One🖖
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